Health Maintenance for Pediatric IBD Patients
Discussion
guide for parents
Inflammatory bowel diseases (IBD), including Crohn’s disease and ulcerative colitis, can have a tremendous impact on the health of your child. This discussion guide highlights some of the things that you can look out for and do, to keep your child’s health on the right track. Speak with your child’s healthcare provider to see what steps you can take together to ensure the health of your child now and in the future.
Vaccinations
The body’s immune system is what keeps us healthy and protects us from becoming sick or ill with an infection such as the cold or flu. Some of the medications that your child takes for their IBD may weaken their immune system, making it easier for them to get common and uncommon infections To protect your child against these infections, it is very important for them to be up-to-date on their vaccinations.
Children with IBD should generally follow the recommended vaccination schedule of the American Academy of Pediatrics (www.aap.org). However, there are a few important points to remember about vaccines for children with IBD:
Live vaccines are not recommended for patients with IBD taking certain medications that weaken the immune system.
Live virus vaccines include:
• Rotavirus (RotaTeq®)
• Intranasal flu vaccine (FluMist®) - The nasal spray version is a live virus vaccine. The injected vaccine (shot) is not a live vaccine.
• Measles, Mumps, Rubella (MMR)
• Chicken pox (Varicella, Viravax®)
• Shingles (Zostavax®)
• Smallpox
• Yellow Fever
• Oral Polio - The version taken by mouth is a live virus vaccine The standard injected vaccine (shot) is not a live virus vaccine.
These vaccines can cause infection in patients who take certain medications, including:
• Prednisone
• Azathioprine (Imuran®, Azasan®)
• 6-mercaptopurine (6-MP, Purinethol®)
• Methotrexate (Trexall®)
• Adalimumab (Humira®)
• Adalimumab-atto (Amjevita®)
• Adalimumab-abdm (Cytezlo®)
• Certolizumab (Cimzia®)
• Golimumab (Simponi®)
• Infliximab (Remicade®)
• Infliximab-dyyb (Inflectra®)
• Infliximab-qbtx (Lxifi®)
• Infliximab-abda (Renflexis®)
• Ustekinumab (Stelara®)
• Vedolizumab (Entyvio®)
• Tacrolimus (Prograf®)
• Infliximab-axxq (AvsolaTM)
This also includes those who took these medications within the past three months or plan to take them in the next four to six weeks You should discuss with your healthcare provider whether it is safe for your child to receive these kinds of vaccines. For an updated list of recently approved IBD medications, please visit: http://www crohnscolitisfoundation org/ibdmedication.
Inactivated vaccines are recommended for all children and adolescents with IBD, regardless of the medications they are taking. Inactivated vaccines are not live, and include:
• Diphtheria (DTaP, Tdap, TD)
• Haemophilus influenza (HiB)
• Hepatitis A (Havrix®, Vaqta®, Twinrix®)
• Hepatitis B (Recombivax HB®, Twinrix®)
• Human Papillomavirus (HPV) (Gardasil®, Cevarix®)
• Meningitis (Meningococcus) (Menactra®, Menveo®)
• Pertussis (DTaP, Tdap)
• Pneumonia (Pneumococcus) (Prevnar 13, PVC 15, PCV 20, Pneumovax 23)
• Tetanus (DTaP, Tdap)
• Polio: The version given as a “shot” or injection is an inactivated vaccine.
• Flu vaccine (Influenza): The version given as a “shot” or injection is an inactivated vaccine. It is recommended annually
• COVID-19 vaccine
Your child should be tested for hepatitis B and tuberculosis (TB) before taking any anti-TNF medications, such as infliximab (Remicade®), infliximab-dyyb (Inflectra®), infliximab-qbtx (Lxifi®), infliximab-abda (Renflexis®), adalimumab (Humira®), adalimumab-atto (Amjevita®), adalimumab-abdm (Cytezlo®), certolizumab (Cimzia®), golimumab (Simponi®), as well as ustekinumab (Stelara®) risankizumab (Skyrizi®), vendoli-zumab (Entyvio®), tofacitinib (Xeljanz®), and upadacitinib (Rinvoq®). If your healthcare provider finds that your child is not immune to hepatitis B, the hepatitis B vaccine may be given Even if initial TB testing is negative, your child may receive continued annual TB monitoring for as long as she/he is on the medication.
Patients with IBD on medications that suppress the immune system should receive the pneumonia vaccine between the ages of two years and older. There are two types of pneumonia vaccines, Prevnar 13 and Pneumovax 23 Prevnar 13 is typically given to all children in infancy as a three dose series. For children ages two to five years who have not completed the series, or have not received Prevnar 13, they should complete the series. Pneumovax 23 is given once, then repeated five years later as long as they are on immune suppression. However, there must be a minimum of eight weeks between receiving Prevnar 13 and Pneumovax 23. For children two years and older, if previously unvaccinated with Prevnar 13, they should receive it once followed by Pneumovax 23 at least eight weeks later.
Pneumovax 23 should be repeated every five years as long as they are on immune suppression.
Bone Health
Active IBD can affect the normal development of your child’s bones in many ways Active IBD can:
• Slow down bone growth and affect the structure of the bones
• Delay puberty, which is a time of rapid bone growth
• Decrease energy levels and physical activity, which are important for normal bone and muscle development
• Decrease appetite, which means your child might not be eating enough foods that contain the nutrients their body needs to build muscles and bones
• Stop your child from eating certain foods that are high in vitamin D (like milk, cheese, and yogurt), which the body needs to absorb calcium from the diet
• Prevent the intestines from absorbing the nutrients it needs to form bones and muscles
Who is at risk for low bone mass?
Research has shown that children with IBD who have disease that remains active for long periods of time may have poor nutrition, delays in growth
and puberty, low levels of certain blood proteins (like albumin), and thinner, shorter bones. Taking steroids (like prednisone) for more than three months can also affect bone formation and growth. If your child is experiencing any of these things, they should be tested for low bone mass
How do we measure bone mass?
There are several ways to measure bone mass. The most common is called a bone density scan (also referred to as “dual X-ray absorptiometry” or DXA). This test takes an X-ray of the whole body using a very low dose of radiation. It takes about 10 minutes, and is completely painless.
How often should my child be tested?
Your child’s healthcare provider may request that their bone density be checked when they are diagnosed with IBD. If their bone density is not normal, they may be retested no sooner than six months later to see if the medications and/or improved nutrition are having a positive impact on their bone density.
What if my child has low bone mass or low bone density?
There are many ways to improve your child’s bone density. However, the best method depends on your child’s specific situation Therefore, you should talk to your child’s healthcare provider about the best way to deal with it. Options could include the following or a combination of the following:
• Getting your child’s IBD under control with other medications, without using steroids
• Optimizing their nutrition
• Using calcium and vitamin D supplements (if vitamin D level is low)
• Encouraging exercise that involves walking, running, and jumping (called weight-bearing exercises)
• Your child’s doctor may also recommend a medication to treat bone conditions such as bisphosphonates.
In some cases, it is helpful to partner with a pediatric endocrinologist to make sure that the low bone mass is not caused by something else, like another condition or disease.
Your child’s bones and muscles are important Work with your healthcare provider to ensure that your child will reach their full growth potential and prevent broken bones!
Pubertal Development
Having IBD, along with poor nutrition, may delay puberty in boys and girls. As a result, a young girl’s
first menstrual period may be delayed, and periods may be skipped or become irregular. In some patients, symptoms (such as diarrhea and abdominal pain) may become worse just before or during menstrual periods If you have concerns about your child’s pubertal development, discuss them with your child’s pediatrician or pediatric gastroenterologist (GI) provider.
Colon Cancer
Colon cancer is a cancer that starts in the colon (also known as the large intestine) There is an increased risk in anyone who has IBD that involves the colon. This includes people with ulcerative colitis and people with Crohn’s disease of the colon (Crohn’s colitis). The risk of colon cancer starts to increase around eight to 10 years after IBD symptoms appear, and increases more quickly after that While this may sound scary, colon cancer is highly treatable when caught early. Keeping your child’s IBD under control and ensuring a healthy lifestyle can play a key role in decreasing their risk of colon cancer. Follow these recommendations to lower the risk:
• Get tested. Most colon cancers that are caught early are completely treatable For this reason, screening for colon cancer is the best way to reduce the risk of colon cancer Your child should start getting screening colonoscopies eight to 10 years after they first started experiencing IBD symptoms,
withafollowupcolonoscopyeveryonetotwoyears afterthat Talktothehealthcareproviderabout whenandhowoftenyourchildshouldgeta colonoscopy.
•TakeIBDmedicationsasprescribed.Theriskof coloncancermaybelowerinpeoplewhoseIBDis bettercontrolledwithmedications.However,there isnoresearchthatshowsonemedicationisbetter thananotheratpreventingcoloncancer.Therefore, besureyourchildistakingtheirmedicationsas prescribedbytheirhealthcareprovider
•Eatawell-roundeddiet.Awell-roundeddiet,with lotsoffruitsandvegetables,isassociatedwitha lowerriskofcoloncancerinpeoplewithoutIBD. Highfiberdietsappeartohaveabenefitaswell Thesedietsaregenerallyrecommended,butcheck withthehealthcareprovidertoseeifahighfiber dietisrightforyourchild,particularlyiftheyhave Crohn’sdisease,becauseroughage(theundigested partoffiber)canbeaproblemiftheyhavea narrowingoftheirintestines(knownasastricture).
•Eatlessredandprocessedmeats.Eatinglotsof redmeatorprocessedmeats(ex.hotdogs,ham, bacon,sausage,andsomedelimeats)maybe associatedwithanincreasedriskofcoloncancer. Thisdoesnotmeanthatyourchildcan’teatmeat, itjustmeanstheyshouldeatitinmoderation Someexpertsrecommendlimitingredand processedmeatstoonetotwotimesperweek.
•GetenoughvitaminD.LowlevelsofvitaminD havebeenlinkedtoinflammationintheintestines andcoloncancer.TakingvitaminDsupplementsto keepyourchild’svitaminDlevelnormalis recommended.Atthistime,itisunclearwhether havingvitaminDlevelsabovenormalishelpful.Itis importanttospeakwithyourchild’shealthcare providerbeforeyougiveyourchildany supplements.
•Avoidtobacco.Tobaccoisknowntoincreasethe riskofseveraltypesofcancer,includingcolon cancer Thisistrueforalltypesoftobacco, includingsmoking,chewingtobacco,dip,vaping, andsecond-handsmoke.
•Exercise.Regularphysicalactivityisassociated withalowerriskofcoloncancer
•Yourchildshouldgetscreenedmorefrequently iftheyhaveprimarysclerosingcholangitis(PSC). PSCisadiseaseoftheliverthatcausesscarring ofthebileducts Theriskofcoloncancerismuch higherinpeoplewithPSC.Forthisreason,itis recommendedthatthosewithPSCshouldgeta colonoscopyonetotwoyearsafterdiagnosisand continuescreeningeveryonetotwoyears.
Skin Cancer
There are two main types of skin cancer, melanoma and non-melanoma skin cancer (NMSC).
People with IBD have an increased risk of melanoma Anti-TNF medications like infliximab (Remicade®), infliximab-dyyb (Inflectra®), infliximab-qbtx (Ixifi®), infliximab-abda (Renflexis®), adalimumab (Humira®), adalimumabatto (Amjevita®), adalimumab-abdm (Cytezlo®), and certolizumab (Cimzia®) are associated with an increased risk of melanoma Azathioprine (Imuran,® Azazan®), 6-mercaptopurine (6MP or Purnethal®), and ustekinumab (Stelara®) are also associated with an increased risk of NMSC, also known as basal or squamous cell cancers. If your child is taking any of the medications listed above, an annual skin exam by a dermatologist is recommended
The good thing is that skin cancer is mostly preventable. Ultraviolet (UV) light damages the skin and is the main cause of skin cancer. The two biggest sources of UV light are sunlight and tanning beds Avoiding UV light is the best way to prevent skin cancer If your child is exposed to the sun,
experts recommend using sunscreen with an SPF of 30 or above, and reapplying every two hours. Using indoor tanning beds is not recommended.
Cervical Cancer
Women with IBD are at greater risk of cervical cancer At this time, we do not know if the higher risk is related to IBD, medications to treat the diseases, or a combination of both. A vaccine is now available to prevent human papillomavirus (HPV), the virus that causes most forms of cervical cancer The American Academy of Pediatrics now recommends this vaccine for all children (girls and boys) as part of the routine schedule of vaccinations. HPV vaccination is recommended for all pediatric patients with IBD The HPV vaccine is safe for patients with IBD taking medications that suppress the immune system. The HPV vaccine requires three doses for immunocompromised patients, no matter the age, and can be started as early as nine years old
Tobacco Use
Current smokers have twice the risk of developing Crohn’s disease than those who have never smoked. For those with Crohn’s disease, smoking increases the risk of disease flares and the risk of surgery If your child smokes, they should consider joining a program to help them quit or talk with their healthcare provider about using anti-smoking agents, such as a nicotine patch or medications A resource that can help: http://www.cdc.gov/tobacco/about/how-to-quit.html
Even being around tobacco smoke increases the risk of Crohn’s disease or more severe disease Therefore, caregivers of children and adolescents with Crohn’s disease should stop their tobacco use.
Electronic cigarettes (known as e-cigarettes) may also contain chemicals that are harmful to your child’s health Avoidance is strongly recommended as e-cigarettes can be just detrimental to health as tobacco.
Eye Health
Some people with Crohn’s disease or ulcerative colitis may develop eye problems However, most of these are treatable and do not pose any significant loss of vision. Therefore, an eye exam by an ophthalmologist (a healthcare provider who specializes in diseases of the eye) should be conducted at diagnosis and then every one to two years. If you notice that your child has any type of eye irritation or inflammation, bring it to your healthcare provider’s attention.
Psychosocial Health
Children and teens with an illness such as IBD may face more challenges and stress than other children their age They often deal with complicated medications, medication side effects, frequent healthcare provider visits, hospitalizations, blood work, poor growth, delayed puberty, and surgery. Several studies have shown that many adolescents with IBD are depressed, and when depressed, their anxiety may increase. This can cause their IBD to be more active. Therefore, it is very important to look out for symptoms of depression and anxiety in your child
Symptoms of depression in children include:
• Sadness or hopelessness
• Irritability, anger, hostility
• Tearfulness or frequent crying
• Withdrawal from friends or family
• Loss of interest in usual activities
• Poor school performance
• Changes in eating or sleeping habits
• No longer enjoying activities that were previously a source of pleasure
If you suspect that your child may be experiencing depression, you should discuss your concerns with your child’s health care providers. Consider working with a local mental health provider who has experience helping children adjust to and cope with a chronic illness If you are concerned for your child’s immediate mental health and/or safety, take him or her to the nearest emergency room immediately.
Self-Management
Sticking to a treatment plan (adherence) can be difficult for both children and adults. Treatment plans are different for each child, but typically include: taking medications as prescribed, following a specific diet, and making and keeping medical appointments as scheduled. Young children need their parents’ help with taking medications, eating properly, and attending appointments. However, as children get older, they should gradually start doing these tasks on their own and take greater responsibility for managing their disease. For example, they should learn how and when to take their medications, as well as scheduling their own healthcare provider appointments Help your child understand why it is important to follow the treatment plan. Figure out ways that you and your child can remember to take medications, such as using a pillbox, taking medication at the same time of day every day, or setting reminders or alarms on a cell phone Once they start taking on these responsibilities, it is important that you monitor them to ensure that they are following through.
Blood and Stool Tests
It is important that your child gets regular blood and stool tests How frequently these tests are done depends on your child’s disease as well as the medications they are taking. Blood and stool tests may be performed to:
• Check certain levels that suggest if IBD might not be well controlled
• Determine how your child’s body is responding to certain medications
• Monitor for unexpected responses to some medications
• Assess for infections
• Help monitor nutritional status and if your child might require additional vitamins and minerals
It is important to get these tests done as often as recommended by your pediatric GI health care provider.
The Crohn’s & Colitis Foundation provides information for educational purposes only. We encourage you to review this educational material with your healthcare professional The Foundation does not provide medical or other healthcare opinions or services. The inclusion of another organization’s resources or referral to another organization does not represent an endorsement of a particular individual, group, company, or product
